It was very cold in Minnesota. I went to the Mayo Clinic with no expectations. I felt deep down something good would definitely come from this trip but I was by no means expecting a kidney transplant. We had been scheduled to be there the entire week. We initially had been given an itinerary of the week of all kids of tests, procedures, etc in preparation for a transplant evaluation. The Mayo clinic is so organized. It is a very busy, crowded place but the Mayo people have a system down to an art. You don't wait very long for anything. If your appointment is at 10, you will see your doctor at 10! That alone impressed me.
Mayo Clinic too is beautiful! It is full of restaurants and shops, you could literally go on vacation to the Mayo clinic! LOL!!!! And we never had to go outside. The entire clinic is connected underground by tunnels. So, the 0 degrees never bothered me. And you are there surrounded by other patients and their families and everyone is upbeat and hopeful. That's what you get at the Mayo Clinic. The best of the best in every aspect.
Before any doctor meetings I had to have labs drawn. The Mayo Clinic is very thorough. So they drew 18 vials of blood. But my fear of needles and blood by this point in the journey is so far behind me. They could have told me they need 50 vials of blood and for the Mayo clinic, I would have agreed. It feels good to have confidence in a medical facility.
My first meeting was with my Mayo Hematologist. He was brilliant. He knew everything on earth there is to know about HUS. I was so overwhelmed with joy. He was and still is optimistic about a kidney transplant in the future. Many pharmaceutical companies are interested in HUS and are looking to create a drug that will keep the HUS suppressed so that a kidney transplant could be possible. This was great news.
Later, I met with my Mayo nephrologist. This man was a genius too! He totally understood the HUS process and how it had affected my kidneys. He was very personable and extremely polite. However, he was not so sure I needed to be put through a lot of tests and procedures that week because I was not really a transplant candidate. He was also very reassuring of potential drugs in the future and felt that someday a transplant could be possible. He decided that he, Chris and I and the hematologist should all have a meeting the next day to discuss my case together and decide on a plan. This was unbelievable to me! 2 doctors willing to sit down in the same room and talk to each other about my case with me! Unheard of. That is why Mayo, I believe, is such an incredible facility. They worked together as a team (just like Barnes in STL) to work on this vary rare case. We all agreed that since the PD cycler was working so good for me and I was not in a medical crisis, we would just sit tight and wait for the right medicines to be developed. So, basically science needs to catch up.
So, the week was cut short but I was not disappointed. I had made great contacts with brilliant doctors, I had all of their contact information so we could keep in touch and they gave me HOPE. Which is all I really went there for, HOPE. It is a powerful thing. Since being home, I have kept in contact with them and best of all, they haven't forgotten me!
A HUGE thank you to that very special Barnes doctor who made it possible to get my foot in the door at Mayo. You are an angel in my corner!
Linda Burke left a comment for Jeff Wilhelm
1 week ago